Talking About Autism: Labels and The Right To Privacy

I began this blog with a desire to depict in some small way the experience of living with autism in the family. I wanted to convey some of the emotions we felt as parents of a child with special needs; the challenges, frustrations and fears of living with something that we have no experience of and no clear view of what to expect from in the future; the joys and hilarity brought to us by our wonderful and quirky child; the sadness of watching his struggle to bend the world to his will, to fit in where he could and his growing realisation that he is different; the pride in each achievement; the sheer unadulterated love and sometimes the despair and feeling of hollow inadequacy for the task. I felt a need to express myself, to reach out, to connect, to educate and hopefully to help other parents asking themselves the same questions or feeling the same emotions.

It’s hard to know where to start when trying to describe life with autism. Autism is the thread that runs through everything that happens in our family life. In the earlier years it dictated how we conducted our day as I attempted to minimise the stresses that would trigger a meltdown or a total refusal to comply with the most basic tasks such as getting dressed, eating, going to the toilet or leaving the house. My whole life revolved around making Thomas feel safe enough and happy enough for us to be able to navigate through the day. It was THERE, always. My son was autistic and everything always came back to his autism. Autism took over our lives. How do you describe something that is your very raison d’être?  I could just as well write a blog that every day read “I did this today because: autism”.  That summed up my life for many years.

It is so much more than a condition: it is what he is and who he is. Autism created the boy who is my son.

Even referring to autism is hotly debated. Some people strongly object to labelling their children as or being labelled themselves as “autistic”, believing that it reduces the person to a generic label. They argue that we should see past the autism to the person behind the label, just as we do when referring to somebody’s race, colour, gender and so forth. They prefer to refer to people as “having autism” and indeed sometimes that is how I describe my son. However, my own personal view is that describing Thomas as “having” autism implies possession, something separate to the person and perhaps optional; it sounds incidental or temporary, like having a cold. My son does indeed have autism. However you might be better saying that autism has him – he is in the grip of autism. Yet it goes deeper than that. It is so much more than a condition: it is what he is and who he is. Autism created the boy who is my son. If he wasn’t autistic, he wouldn’t think and act the way he does, he wouldn’t have the personality he has, he wouldn’t be who he is. He wouldn’t be Tom. Calling him autistic is not derogatory, it is a description, it is a fact. I agree, he is not just autistic. But he is autistic. Autism is how his brain registers and filters the sensory input that creates his experiences, his thoughts and his emotions. Autistic is the configuration of his brain that causes it to happen. He has autism, he is autistic. I have no difficulty understanding the difference and discerning between the two descriptors.

Then there’s how to refer to his autism. Calling it a “condition” seems inappropriately medical; he isn’t pregnant, he hasn’t broken a limb and is mildly inconvenienced for a temporary period: it’s an all-pervading, life-long feature of his existence. But going so far as to call it a “disability” seems rather extreme. He isn’t mentally unwell, he isn’t visibly physically afflicted, he isn’t mentally below par, he doesn’t look or act disabled. How can I call it a disability when I look at his laughing, engaged face as he tells me yet another long and complicated story or ropes me into another crazy role-playing game? (So much for the myth that autistic children have no communication skills and no imagination.) And yet he is disabled. He needs one-to-one assistance at school to keep him focused on his work and to prevent him from being a distraction to the rest of the class with his chattering and questions and fidgeting. He has to break away from work regularly throughout the school day for brief periods to release pent-up energy and to allow his mind to reset when it becomes overloaded with mental and sensory stimulus. (Classrooms are very noisy, bright, exhausting places). He can’t follow complicated sets of instructions, he can’t read body language or facial expressions, he doesn’t understand social cues and takes everything literally so he cannot follow subtle humour or understand the tacitly-understood-but-not-openly-expressed rules of society. He struggles to understand lessons unless he is told from the start what he is supposed to do and why he needs to know. He struggles to understand the rules of games other children play. Imagine the wearing effect of constant low-grade anxiety eating into you all day, every day, as you don’t quite understand what is going on at any given time and have to concentrate incredibly hard to keep up. Thomas’ day is the equivalent of viewing the poise of a graceful synchronised swimmer above the water and not seeing the frantic paddling and sculling that goes on below just to keep afloat.

Imagine the wearing effect of constant low-grade anxiety eating into you all day, every day, as you don’t quite understand what is going on

He can’t take in verbal and visual information at the same time; he has to be given longer to process information before he can use it or respond, he can’t answer questions or express himself fluently, particularly if he feels under pressure. Under pressure his conversation is stilted, rambling, formal, full of odd expressions and quotes he has picked up from other people and television shows as “nearest approximate descriptors” to convey what he does not have the words himself to describe. Yet if you get him onto a subject he loves or give him time to write it down he will use a varied and advanced vocabulary way beyond expectations, taking everybody by surprise.

He is extremely fussy about food and will only eat a small range of foods because he is so sensitive to taste, texture and smell. He struggles with motor skills and only just learned to ride a bike last week read herehere, and here. I haven’t even begun to teach him to tie his shoelaces yet but will start soon so that he is ready for High School in September. He struggles with zippers, scissors, a knife and fork and handwriting (he still doesn’t have a pen licence).

He uses so much energy trying to “pass” and fit in all day long at school or on day trips when we go out that he either has to retreat to his bedroom to recover because he is physically and mentally wiped or he becomes so tightly wound with tension that he has to exert himself in a prolonged bout of physical exercise to de-stress. When the weather is warm enough and dry enough he will easily spend a couple of hours on the trampoline after school, releasing the pent up stress and soothed by the repetitive and predictable safety of the “cause and effect” of bouncing. If the weather is wet and cold, our neighbours are treated to the thumping of him doing a Boogie Beebies or Wiggles dance DVD in his bedroom.

He is physically developed but emotionally underdeveloped, having the naÏveté and sweet nature of a child a good couple of years younger, still believing in the kindness of strangers, that everyone will want to talk to him and learn his latest news. He still loves Thomas the Tank Engine and Friends and all those pre-school children’s TV shows. He still talks to my hand, “Sockmonster”, and treats it like a real friend. He still sleeps with dozens of soft toys in his bed because it makes him feel safe to feel them all surrounding him. Autism has made Thomas younger for longer and he is an endearing not-so-little little boy.

He thinks and perceives the world differently. From different input you will get different results. Don’t blame Tom, it’s science, bitch.

These are not life-limiting elements of disability but they are disabling enough to prevent him from keeping up with his peers educationally and socialising easily with them. They are enough to make him different, enough to set him apart and potentially to make him a target for bullying when he starts High School. They are enough to limit his ability to do justice to his intelligence and lively mind because he cannot produce work in the manner expected for qualifications and learning requirements. In many, many ways, Thomas is disabled but not disabled enough. He is expected to “pass” and meet all the usual social and educational criteria because he seems so normal at first glance. People don’t see the mental and emotional toll it takes on him, and the effort involved behind the scenes to keep his life ticking along and to keep him progressing. Even those who know – school, friends and family, even I myself – we forget at times that he thinks and perceives the world differently. From different input you will get different results. Don’t blame Tom, it’s science, bitch.

At what point does my son’s story stop being part of my story of life as his parent/primary carer and start being solely his story to tell?

Which brings me back to the second part of the title of this post: privacy. I began this blog to explain what life with autism is like for Thomas and for us, his family. I post incidents and amusing stories regularly on my personal Facebook timeline as I have done for years. I recently started a Facebook page for this blog and you are welcome to post comments and questions to me there or message me: FB Page.  As my young boy grows up to become a young man there is every chance that he will look through my FB timeline and find comments about him, good and bad. I hope he will see that he is loved and that I have devoted my life to his best interests. I have discussed this blog with Thomas and his Dad to ensure that they are happy to be included and both have given their permission. Indeed I have created Thomas’ own page here for him so that he can be part of the process and publish his own material: Tom’s Corner. Yet I am aware that he has a very limited understanding of what being the subject of my blog means. He can’t possibly give informed consent. He may be fine with it now but how comfortable will he be in his teens and twenties when he reads my amusing stories of his toilet habits or his quirky behaviours or childish misunderstandings? When he sees photographs of himself? Will he resent me publishing this information? Is it mine to publish or his? It’s one thing to post information to friends and family, and he might even have mixed feelings about that; it’s quite another to publish to the world. I try to keep details vague and to uphold our anonymity. I am very aware of the dangers that the net can pose to vulnerable people and I am taking appropriate steps but nevertheless the central question remains: do I have the right to discuss my son with strangers? I’m talking about my life and I’m expressing my thoughts and feelings, hopefully I’m helping others, but will it harm him? At what point does my son’s story stop being part of my story of life as his parent/primary carer and start being solely his story to tell?  It’s this thorny issue that caused one blogger I follow to bring his blog to a close as his child hit his teens: My Son’s Not Rainman. Whilst I was terribly sad to lose the camaraderie and support that his blog brought to my life, I completely understand John Williams’ decision. One day I may find myself reaching that point also.

This blog is a celebration of my son, as well as a glimpse into life with autism and I will continue documenting his story until I feel it is no longer appropriate. However, I will at all times try to remember that it is HIS story as well as mine, that he has a right to dignity, privacy and anonymity and that one day he may well read what I have written. I hope he reads a story of love, hope, joy and, above all, of our joint journey into that greatest adventure of all: life.

Public domain photograph by Buecherwurm_65 on Pixabay.com

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7 thoughts on “Talking About Autism: Labels and The Right To Privacy

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  1. It is a thorny issue isn’t it? I also try to walk that line (when I rarely post 😕) I think you’re doing a great job and I enjoy reading about you & his Lordship. Tom & Ben seem a lot alike. As to what to call autism, I always just use Disorder. As in ASD- Autism Spectrum Disorder. Of course someone is always going to disagree. You just have to do, and write, what you’re comfortable with. This is another beautiful, honest post!

    Liked by 1 person

    1. Thank you. 🙂 I find myself calling it a condition most often but nothing really fits perfectly. That’s autism for you – doesn’t fit into any box neatly and just when you think you’ve got a handle on it things change again! 😀

      Liked by 1 person

  2. I can relate so closely with your struggles and successes raising your son, Tom, because I went through many of the same trials and experiences myself with my daughter, born with classics autism. Her story details our life from birth to present times as an adult. Lonely Girl, Gracious God is the book I wrote and you might be amazed at the comparisons! Thank you for your writings and I will continue to follow you! Lauri

    Liked by 1 person

  3. I am British. That does not make my nationality the whole of me. And it would be silly to pretend it did.

    I am White. That does not make the colour of my skin the whole of me. And it would be silly to pretend it did.

    I am….Not Male. That does not make my gender or lack thereof the whole of me. And it would be silly to pretend it did.

    I am Autistic. My neurology is an integral part of me, yes, but it’s no more the whole of me than my other examples were.

    Liked by 2 people

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